Afinitor/Aromasin
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Romansma,
I missed most of the game because I was playing Bunco (dice game) with some friends, but I did tape it. So glad you got a chance to see the game. I like your lady bug story.
Terri
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Romansma - so glad you got to your game - sounds like you might have been the good luck charm!!!
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Hello,
Mom started the Affinitor - 10 mg / Aromasin combo but 6 days in it she has terrible mouth ulcers. Visited the doc today and he said to take 3 days off and then to start with a 5mg now. Hoping the 5mg will work with less SE.
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Hope so too JC. Let her know to drink a whole glass of water with each dose. Also, probiotics have helped me.
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Love all the good news I am hearing today. Lots of good scan results from BC sisters and now the Giants have helped Romansma build a great memory.
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Pretty wiped out from my adventure last week. Haven't left the house since returning Saturday. Hoping to find my groove again soon! For now, lots of rest, lots of fluids, getting my food intake back to normal. Big reminder that things are not as normal as I'd like them to be! It was all worth it, though! Tomorrow, Game 1 with my Giants. Can't wait!
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Did you all see Bestbirds post about the Bolero study - Afinitor & Aromasin VS Aromasin & Placebo. Interesting. 4.6 months progression free was all adding afinitor provided- I think I read it correctly. It's worth a peek-a-poo. So many others seem to have had good luck and more months than that, so I am puzzled.
Be well ya'll.
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I didn't see that......going to look for it now.
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Here is the link https://community.breastcancer.org/forum/8/topic/825627?page=1#post_4195514
To be clear, it's 4.6 months overall survival. In other words, those that took the combo lived an additional 4.6 months over those taking just Aromason. Not as good as hoped, but not awful. Hmmmmmm. I find myself asking, is it all worth it. For now, my answer is YES!
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Rosevalley, and Romansma,
The median progression free survival is of 4.6 months , not survival it is about the progression . Don't ask me why doctors differentiate between the two. So the median is the avarage but some people are going much longer than that and yes it is worth a try. Unfortunately for me i had a huge progression on aromasin alone , it kind of rendered affinitor useless to me. But i got my genomic testing back and it showed amplification of HER2 , so now they are thinking of adding herceptin to my treatment. In the result also it showed that my cancer responds only to taxanes as chemo. Good luck to you Romansma, i hope your scans come out with good results and believe me stable is good. You are in my prayers.
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I just want to be clear....the link I posted was for updated Bolero-2 findings and they are specifically Overall Survival at 4.6 months. The orifginal findings were for PFS and I believe that was about 7.4 months.
Thank you for the kind words Woody. That's great news about your genome testing!
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Romansma, i hope you stay stable and in good health and at an acceptable quality of life and a period which way longer than whatever studies say. Nobody knows the unknown ! It feels good to say i tried, and it is always worth it for ourself and our loved one. I hope you hear good news soon. Thanks for my genomic tests congrats, my doctors seem to be excited too since they seemed to be running out of options. Hugs.
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Just finishing my 7th month on the combo and got CT results. All tumours significantly smaller or disappeared (lungs and liver) except new 2cm tumour in spine and new path fracture of pelvis. Yup I had been having pain in my leg and wondered about hip fracture, but it got me in the pelvis. Anyway, staying on combo and getting rads on spine and pelvis. Also dropping Zometa and moving on to Xvega. But I wonder if A/A is starting to fail? Good vibes for Romansma on her scan. I think she has been on the A/A the longest?
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That's some pretty good news! Except for the pelvis and spine. Where on your spine? I had radiation to spine at the beginning of this year. My scan is on Monday. Having conflicting feelings about it. On one hand, I have been on this combo for about 10 months now and that's a long time according to the studies. On the other hand, I really wanted to last long enough to try Palbpciclib (hoping for FDA approval by April at the latest). Not to mention, the holidays are coming up.....and my 50th birthday......and I really want to have hair for all of it! I'm only half joking about the hair. I really don't want to look sick and get all those lost puppy looks from people all the time. It will also have an effect on my kids, especially the youngest. He already worries too much. And infusions.....and more appointments.....yuck!
Hard to explain, but I also feel like I shouldn't need a scan to tell me how I'm doing. I want to have to confidence that things are going in the right direction. But....not sure I'm there!
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Romansma- I hope you get what you want!
Good luck to the rest of you too. Hugs around.
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Romansma,
I hope your wishes come true , for you, your kids and that you get a wonderful xmas. Hugs.
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Just got back from appt with RO. He will hold off doing rads until I am back from PARIS!! says it is to prevent further fractures. He will do 5 zaps to sacrum and pelvis area. I had lumbar done 3 yrs ago and didnt have any problems but I see that others have had a really bad time with back rads. Well, it is only 5 so hope it goes quickly. Will start mid Nov.
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Have fun in Paris! Five zaps should go quick and hopefully painless. I'm taking a self prescribed break from AA this past week. I got my hands on my scan and it is showing progression. Good news? No visceral disease showing. Bad news? New lesions in multiple places and existing areas show increased SUV. I meet with my MO tomorrow. I've asked her to look into trials for me. I'm not ready for IV chemo. Not sure what I will do. I am even considering a 3 month break. Chemo for ILC isn't always effective. Each new treatment gives us overal survival stats in the 2-4 month range IF it works for us. For me, the probability of chemo working is pretty slim. Anyway, just thinking out loud here. I hope all you AA ladies are having good SE free days!
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Romansma,
Sorry about your progression on AA. I had new spinal bone mets on this combo but my onc kept me on it & we did spot radiation. I've been on it a year and tired of the mouth sores. I'll probably be having scans again in Dec.
Hope you can get into the palbociclib trial soon.
Terri
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Romansma, just wanted to let you know that one of the pitchers, Ryan Voglesong, is a childhood friend of my daughter, Cassie! His parents are wonderful people and we have followed him since he was 4 years old!! We are so proud of him and love the Giants!!
Hope you're doing well! My health has changed some but I am still counting on going to my son's wedding in May!!!
Love,
Judy
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Romansma,
I am so sorry to hear about your progression on AA, but like you said at least no visceral involvement and i hope it stays that way. Did you ever try xeloda? It has good response rate. If not you might want to discuss this with your onc. You are right ILC is not very responsive to chemo because of its low mitotic rate. But sometimes you get a decent response along with other meds. Also ask your doctor about AR+ androgens it seems it is exactly like ER, PR status and most cancer (more than 50% ) are responsive to meds which blocks the androgens feeding cancer. Check the following article it talks about it in people who are ER, PR.
http://www.sciencecodex.com/new_target_new_drug_in...
Please, keep us posted. Lots of prayers.
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Thank you for the well wishes. Naturelover, that's so cool about Voglesong. October and post season baseball. Awesome! Anyway, met with my MO today and she agreed that AA had lost its effectiveness for me. I don't qualify for trials, but she is hoping to talk to the manufacturers of a couple trial drugs to see if we can get them. In the mean time, I was offered Xeloda and radiation to prevent fracture in my hip. I declined the xeloda, for now. I've researched the numbers and I just don't think it makes sense right now. I will talk to RO next week and make a game plan for that. I have an appt with my MO in a month and we will see how I feel and decide what to do then. So, for now, I am looking forward to regaining some red and white blood cells and feeling a little better except for the pain. I wish you all success on AA. We figure it worked for 7-8 months for me.....better than nothing!
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Hello All-
I have been on the AA combo for three weeks now: the mouth sores are starting to subside but the scalp sores really are uncomfortable... Does anyone have some advice for easing the soreness? In addition, did anyone feel emotions similar to when you had pms? Some days are super "up" and others I seem to be not such a nice person! I feel like this is working though; waiting three weeks for the insurance to go thru and not being on anything I could feel things in my body starting to go haywire; since I started AA a lot of my pain areas seem to be gone or a lot better so I am hoping this is working! Thanks to everyone out there this site is so helpful..crappy club but wonderful members!
Cisco 711
I forgot to ask: does anyone suffer from a bloody nose? Everytime I blow my nose it has clots...yuk
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minor freak out...my TMs have increased since I've been on the A/A combo. I started on the Afinitor at 10mg but felt like I was having a brain aneurism; am now on 5mg, but will try 7.5 and see if that makes any difference. Does anyone ever do this combo along with another chemo. I'm just worried that my numbers are so high that the A/A combo won't be effective.
Romansma - I took xeloda for about a year. The fatigue was the worst of the SEs, but it did keep things in check for that year.
Cisco - give Nizoral shampoo a try, also there is a new anti dandruff shampoo out by Aveeno that is really working for me.
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Hi, I have been away for a while from the site but have good news to report. The pelvic pain was hardly there when I started A/A, and then it got really bad and I took Tramadol for six weeks or so to deal with it. Now the bone feels so much better that I have gone off the Tramadol and all painkillers and have a lot of energy. A scan is scheduled for December 9th, long overdue for the lungs and liver. It should have been done sooner, really. The only scan I had this year was the one that found the new bone met back in July. The follow up for the bone will be done with the one for organs on December 9th. We will see what happened with the Afinitor and whether I have lung or liver mets that I don't know about. Then on January 8th I will see a breast cancer specialist at the National Cancer Center in Heidelberg, Germany so they can evaluate how my treatment is doing and see if they can suggest any improvement to it. In other news I just completed 2 months on A/A and am moving now from 7.5 to ten milligrams, and it is only now that I am beginning to have mouth sores. I haven't had any discomfort except tiredness, any headaches would have been masked by the Tramadol. So we will see how it goes. At least now I feel pretty optimistic, the pain relief from the Afinitor working on the tumor is really great so my mood is good. Hoping you all have good days today.
Lisa
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Mompsych, thanks for the shampoo tip it has helped with the scalp sores and the embarrassing itching!
I hope the A/A is still working for you it's scary when one option doesn't work out-I was put on A/A because the hormone therapies did not work for me. My prayers are with you.
Rough week for me and the meds my mouth sores came back with a vengeance and the magic mouthwash helps but only temporarily- I actually bought acne cream for the first time in decades to clear my skin which has worked wonders!
Thea I celebrate your news! I have been on 10mg for a month and the mouth sores have been the worst SE
I have been fortunate with energy and have finally figured out to rest when my body tells me to, not always easy to follow. I am sending positive thoughts your way for your scans and the doc appointments.
This regime is tougher than I anticipated... I thank the stars above for this site and all the support of its members
Cisco
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Hello,
My mom started with 10mg but due to bad mouth ulcers had to shift to 5 mg wiith a gap off 4 days where she didn't take meds due to ulcers. However after a month the blood report had markers increasing and hence the doctor has now shifted to alternate 10mg and 5 mg.
Please advise when you get ulcers do you stop the med or it automatically subsides as I don't want to haave a gap in meds for mom this month because if this month shows no improvement then we may need to change the meds.
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JCSindia - it's up to your mother's onc as to whether she gets a "holiday" or not - we are not drs. here and everyone is different so any advice on dosages needs to come from her onc.
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Cisco, just wanted to get back to you and let you know I experienced everything you are talking about. The scalp sores went away on their own after a few weeks. Yes, I too, had bloody noses. They also subsided after about a month or so. Last, the moods. I had a month or two that I was quick to get angry and it was a boiling over situation quite often. It hasn't happened since and I can't be sure it was the AFinitor, but I believe it is mentioned as a side effect. I hope many of the SE's are starting to fade for you
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Hi, so nine days into the increase to 10 mg I am having very few side effects except for fatigue and diarrhea, I only had the mouth sores that one day. But today I have mild flu like symptoms which are mostly the fatigue I guess. Not much else to say, just fondest regards to you all.
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